In November 2023 I started to itch “down there”. It was occasional, not daily, but quite intense. I acknowledged it and wondered whether it would reach a threshold requiring action. Hope not!
My end-of-November treatment visit approached. I had a urine test which came back positive. I hoped I would soon be in possession of a course of antibiotics to address an infection which would sort the itch. Next week they told me there wasn’t an infection and the lab didn’t grow anything. Oh! Back to Square One, then.
A couple of weeks later I noticed it started getting more annoying. And Daily. Then, Monday morning there was a spot of blood and that was The Trigger. I was on the phone to the GP straight away. I was given a mild wash and a steroid ointment to resolve. We didn’t talk about a diagnosis, just the “fix”.
By my analysis of my symptoms and the ointment, it looks like I have lichen sclerosis. It can’t be cured, only managed. One cause is an imbalance in the immune system . . . . Yep, I am convinced this is another iRAE (immune related adverse event).
The one encouragement I take, is yet again, the articles I read on the subject state that people with iRAE have better outcomes in terms of overall survival and disease progression.
However, it’s heighted the question around when I should stop treatment. Lichen sclerosus can lead to vulva cancer in 4% of cases. We need to maintain a sense of perspective with drugs to control the kidney cancer which then heighten risk of cancer in new sites. As they say, there’s no such thing as a free lunch. But all of the side effects I was warned about pre-treatment, I have had none! I just get the rare undocumented ones. As time progresses, I am gaining a more balanced perspective of Immune Checkpoint Inhibitors (ipilimumab/nivolumab).
After a month of daily topical steroid cream treatment, I start to apply a 2-days-a-week regime. The gaps seem too long and I start to feel irritation after a couple of days without application. I’ve now settled on adhoc, or every second day or whenever I start to feel discomfort.
I got myself into a right state about how this would be monitored and not wanting to talk about it with my team. However, my desire for answers became greater than feeling uncomfortable talking about it. A lot of time had passed since I went to the GP on 12/12/2023. I had a meeting with my oncologist yesterday. He clarified that the risk of vulva cancer is smaller than 4% when caused by an immune imbalance. This is because the interaction between cells is not the same. The explanation was very much over my head but I’ll hold on to that outcome.
Next blog will be on the discussions surrounding stopping immunotherapy, the science, my thoughts on this topic, and perhaps even a Decision!
